Colectomy for colonic inertia

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ale827
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/28/2009 4:57 PM (GMT -6)   
Hello everyone. I am 21 years old and im pretty sure I have colonic inertia. My drs are leaning towards me having a total colectomy. My rectum is fine, they will be able to keep that so i will never have a bag or anything. Im very nervous about the whole thing, and id love to talk to others who have had this surgery and how their lives are functioning now. Ive had test after test, and ive seen a million drs and my problems seem to get worse everyday. I barely go to the bathroom twice a month, if that, and my stomach is always bloated and in pain. Ive heard a lot of great stories about people having a colectomy, but im worried if i do have it.. if im going to have to go to the bathroom 6 times a day or more. Im not sure if I want that. but im sure anything would be better than what im dealing with right now. its awful. anyone out there who can tell me their experiences would be wonderful!

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 7/28/2009 9:52 PM (GMT -6)   

Hi ale and welcome to the forum,

There are some of us on the Total Colectomy 24 site that have had a colectomy and many wonderful people on all of the sites that would be willing to share information with you.  I personally had a subtotal last July and my surgeon left 2 inches of my rectum.  I have had an extremely successful surgery.  I did have many bms in the beginning, like 20+ daily but once my small intestines took over I was down to 8-10 by 6 weeks and able to return to work full-time.  By nine months I was having two normal bms daily until some kidney problems altered things but otherwise it was the best decision I ever made.

I will be more than happy to answer any questions you have.

I wish you the very best,

Judy

 


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


adaperl
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 10/10/2009 4:05 PM (GMT -6)   
I wish at 21 someone had concluded colonic inertia than tell me countless times i need to eat more fiber and drink more water. Good luck to you and i have to say if was the best thing for me to have a total colectomy. Still issues, but well worth it. I am new to this site and still trying to figure it out. My email is adaperl@gmail.com if you want to ask me any questions. I have been living for the last 8 years with a total colectomy. Life is good.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/10/2009 7:00 PM (GMT -6)   
Adaperl,

I think I read on one of the posts that you drink plum juice...6 months out from surgery I need to drink prune juice almost daily. Do you drink the juice every day? Were you going alot after surgery and it stopped suddenly, or have you had constipation issues since surgery? It's so discouraging to have gone through the surgery to still have issues, isn't it? I am better than before the colectomy, but I still spend so much time in the bathroom trying to go.

Oh...and welcome to the site! You'll love it here!

Janie

adaperl
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 10/10/2009 10:47 PM (GMT -6)   
Janine, for the most part, i drink a bottle every couple of days. Sometimes i drink a bottle a day depending on how i am feeling or if i ate too much at a meal. By the time I went to my six week check up from surgery, i told the Dr i was not going. He basically told me Well, you cant be constipated. They do not believe me when i tell them even my useless gastro Dr. He looks at me like a number and a co-pay. I will travel an hour from now on to see a different DR. I ended up having a small bowel obstruction a little more than 3 years after initial surgery. They actually say i you can make it 3 years, you shouldn't have any problems. Then, 2 years after my small bowel blockage ( from scar tissue ) i was in the hospital for several days and that's when they said that basically my small bowels are losing motility also. No tests to determine this, just that's what they think. I am really careful of how much food i eat. Its very hard sometimes cause well, i get hungry. I stay away from all processed foods, no carbonation ever, very little raw fruits, definatley NO bananas or rice. I do drink coffee, but that's all except the plum juice and water. I had my gallbladder out when i was 25. Over and over thru out the years, they have always told me, your OK, your too young for anything major. Yeah, i dont buy it anymore. I was 31 when i had my first large bowel obstruction. I also had a double hernia surgery just a year and a half ago that they said was from all the surgerys. I also think my job ( postal worker) had something to do with it with all the heavy lifting. I am so glad i found this site. I have always felt alone is this even tho i have great friends. They just dont get it. I hope you try the Plum juice because its not as forcefull as the prune juice and once you get on a somewhat schedual with it, it really helps. When i first had the surgery, i was in the bathroom every hour or so. After several weeks, and things started to heal, i could tell it was slowing down. I almost died because of my blockage so for the first year i figured the less that went in, the less my body would have to digest. I lost almost 40 lbs that first 6 months. I do have a better quality of life. It has been almost 8 years since my ordeal started. It was the saturday after 9-11. This mit sound stupid and corny but listen to your body. I will tell you what works for you if you listen. I know if i eat a hot dog, i am going to be in a lot of pain from gas and all the preservatives. Now, does that mean i havent had one in 8 years? No, but, it better be the best darn hotdog in the world for me to eat it. Not sure about you, but i also believe all of thses issues are somehow tied to hormones. Not sure if anyone else thinks that but, over the years, even before my surgerys, i always thought that. If you have any questions or just need to talk, let me know.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 10/11/2009 8:50 AM (GMT -6)   
Adaperl, have you had a small bowel follow through? I just had this test Friday and will get the results tomorrow. I suffer from colonic inertia and am considering the total colectomy. Tracy

adaperl
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 10/11/2009 11:27 AM (GMT -6)   
Tracy, to be honest, i have no idea what a small bowel follow thru is. Until I found this message board, i thought i was the only one to have these issues after a total colectomy. I have to say, with all that i have been thru, it was the best thing and my quality of life is so much better. I have read some threads about everyones diet and it makes so much sense to me. Dont be afraid of the total colectomy. Will they be able to do it laproscopic? If they can, that would be so much better. I wasnt able to have mine done so i had the big Zipper from pelvic to chest. With all that has gone on my stomach looks like a road map. My boyfriend thinks scars are sexy so all is good. I just want you to not go into it like i did and think its a cure all cause for some it is, but as im reading here, for a lot of us its not. How old are you? I am 39 and all this happened to me around 31. I wish Dr's had done more when i was younger cause then i wouldnt have has to suffer for so many years. Let me know what a small bowel follow thru is. I know when i was healing from my first blockage and i had the colostomy. they did some tests on me but it was basicly like GI series and the sitz marker test. I mean, i had the marker test done, then like 5 days later i had to prep for a gi test and i still had markers in me. Amazing. Let me know what the test is and what the dr's say.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 10/11/2009 12:49 PM (GMT -6)   
The small bowel follow through was not painful..but you have to drink 2 containers of barium and it tastes horrible...I was shaking, shuttering, ang gagging. It made me feel very full. Tney then take xrays every 20 minutes to make sure the barium is moving. When it got to the cecum, a radiologist came in and took pictures with a fluroscope...a moving xray. He put this paddle thing with a ball on my stomach and pressed down and took maybe 12 to 15 pictures. So not painful, just drinking the nasty barium was almost impossible. But I did it. I am getting desperate and will probably now ask for a barium enema. I want all the tests that I had last year repeated, except for the transit marker test. Colonic inertia diagnosis is not up for debate. I definately have that. I just want to be sure that me having the total colectomy will help me since I have an outlet problem too.

My surgeon said he will do an open surgery, so cut down the abdomen....UGH I am 39 years old now and have suffered from CI as far as I can remember...even as a child. My husband is very supportive and has never been bothered by my scars or stretch marks from our kids. He wants me to find relief from this horrible problem.

This message board has been wonderful for me. This board has taught me more than any doctor has. This is where I learned about all the lovely tests that we need. LOL

Tracy

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/11/2009 6:18 PM (GMT -6)   
Tracy,

I had the small bowel follow through before my surgery and passed it just fine. Now, 6 months after surgery, I still can't go much at all without drinking prune juice or using an enema. When you see your doctor, ask him how accurate the small bowel follow through is. I'm not sure what isn't working with me, just my rectum or my rectum and small bowel.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 10/11/2009 6:23 PM (GMT -6)   
Janie, I assume your problem is the same as mine...a rectum that does not work....Because your problem sounds like mine. I can have a whole colon full of water and I can't ever just sit down and blow the toilet up. It is this terrible pressure, but no amount of pushing will help it to come out. I then insert suppositories and then my finger to release the water. It is a nasty way to live, but hey, atleast I have figured out how to get the poop out without going to the ER.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 10/11/2009 6:31 PM (GMT -6)   
Janie, what were your angles on your defecogram?

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/11/2009 7:15 PM (GMT -6)   
ok--just went to get my test results. I'm not sure what angles you mean but this is what it says:
"Scout images are unremarkable. Rectal, oral, and vaginal contrast material. A 1 cm anterior resting rectocele. Rectum 3 centers. Anorectal junction lies approximately 3 cm below ischial tuberosities. During CAGLE, the anorectal junction lies 2 cm below ischial tuberosities. During maximal evacuation, there is a relataively good emptying. Small anterorectocele measuring 2 cm. rectum 3 cm. Negative intussusception, enterocele or signoidocele.

Impression: Relatively good emptying. Minimal decreased emptying distally. Small low anterorectocele.

Any idea what that means?

By the way, just looked at my sitz study from before surgery--47 markers in right colon, 43 markers in transverse colon, 23 markers in descending colon and 6 markers in the rectosigmoid. 119 out of 120 markers. I didn't have a BM the entire 6 days.

Janie

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 10/11/2009 10:31 PM (GMT -6)   
Mine says

The anarectal angle at rest is 117 degrees decreasing to 102 on squeeze maneuver.
On defecation, anorectal angle is appr. 145 degrees. On defecation, there is pelvic floor descent noted. There is some descent of the small bowel, but this remained above the ischial tuberosities. The patient was then unable to complete evacuation though some of the barium was expelled. This was despite repeated straining. The findings could represent some degree of anismus.

Overall impression was..Pelvic floor descent with incomplete evacuation of contrast. Only minimal decrease in anorectal angle on squeeze maneuver.

I wonder why your angles aren't listed.

Because I found what the normal findings should be..

At rest is 90 degrees.
On straining is 135 degrees.
On squeeze is 75 degrees.

Have you had another defecogram since you had your surgery? Or was this before? Because if you haven't had a new one, then I would ask the doctor to order you one to try to see what is going on. I also wonder if maybe your connection has narrowed in. Have you been checked for that?

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/12/2009 8:37 AM (GMT -6)   
Tracy,

I have my 2nd defocogram on the 22nd....I will ask then about the angels are; I may take my copy of the old test with me. All I know is, I still can't poop without something giving me a "push". I honestly wonder if maybe the bottom of my small intestine isn't working, because sometimes all it takes is a glass of iced coffee, and within 5-10 minutes I can have a real "blow out",...like today. I didn't drink prune juice last night, I drank grape and it didn't work nearly as well. This morning I felt "full". I ran to Dunkin Donuts for my coolatta and within 10 minutes, I feel great....so I'm not sure if it's stuck in my rectum or the bottom of my small intestine.

My test didn't show anyt anismus, and I'm anxious to see if the new one does. That is real issue, isn't it? Your surgeon thinks you'll be able to go ok even with that? As far as I know I don't have one, and I still have so much trouble. Be sure to ask him about that!

Gotta run and shop with my mom!

Janie
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